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Wednesday, August 21, 2013

Our Seemingly Endless battle....

Most of you may not know the struggles we have faced since birth with our now 5.5 month old angel because I tend to keep it private, but I am about to let it all out. I have been bottling up so much emotion since the day she got here that I am about to explode so watch out....

Here is a brief synopsis of her birth story located Here, Here, & Here....Yes I know a three part Birth story but that first week of life was a whirlwind!!It goes like this......She was born at a healthy 7.4 lbs at 10:12 AM on March 2, 2013. We were both doing great with no problems to speak of (other than a little jaundice that should pass). We go home on Monday and return for her checkup on Tuesday only to be sent to the Hospital for Jaundice and blood tests. At 3:30 on Tuesday afternoon I got a phone call that rocked my world! Em's sodium levels were so high she was near brain damage. If she did not get to the ER as soon as possible it could affect the rest of her life. SO we rushed to Children's were they immediately put an IV in her head and placed her under the jaundice lights (her billirubin levels were elevated too) After 4 days in the Hospital and forcing her to eat even 1/2 oz every 4 hours she finally begin to eat and the levels began dropping. We were released from the hospital and she begin sleeping and eating VERY well!

We thought this was the end of the problems, but turns out it was only the start!

Two weeks later we go back for a weight check and she is right at birth weight! Amazing considering what she had been through....two more weeks (1month checkup) and she has only gained 3 oz....we worried a little but we would re-check in two weeks. We go back for another check in mid April and still not much gain. By this point she is spitting with every feed and nothing she is eating is staying down. She was diagnosed with reflux and put on some Zantac.

For a month after she was placed on Zantac she did pretty well. She gained up to 11.7 lbs by the beginning of May and we were pleased! Then all of a sudden it stopped working. They upped the dosage and still nothing....we were referred to a GI specialist and her appointment was at the end of July. When we went to the Dr she weighed 11.7 (the exact same as she did at the beginning of May!) and she gave her another medicine to take along with the Zantac and ordered an anatomy scan and some stool tests.

Just this week we went back to the Dr to get the results and they weighed her again. I bet you can't guess how much she weighed?? Yea that's right 11.7!! She had not gained an ounce in over 3 months. Lab tests confirmed she is allergic to dairy and either I have to be on a strict dairy free diet or she will have to be on a special (very expensive) formula.

So that was all fine and dandy and we were willing to do whatever we needed to do to help get her healthy and back on track....and then she threw in this curveball from left field....Here were her words to me....

"Additional test will need to be ordered due to her Failure to Thrive. The first and most important of which is a sodium chloride test to check for cystic fibrosis."

UMMMMM excuse me?? Did you just tell me that my daughter may have a life threatening genetic disorder?? I lost it. I didn't hear much of anything else, but basically they are doing every test known to man to see why in the world she has not gained a single ounce or grown even a couple CM in 3 months.

I remember asking the Doctor if the Milk allergy could not be the cause of everything and that if she gets on this formula it will fix it all....she said that even babies with Milk allergies should be growing ever so slightly. She would be completely shocked if that was the ONLY reason she was not growing.

To put it lightly I am a nervous wreck...We go tomorrow to have the tests run and we will not get the results for two weeks. Talk about the longest 2 weeks of someones life....

I praise God every day that she is living breathing and seemingly thriving in this life. I know it could be so much worse, but to all you Mommas out there you know the heartache and pain you feel when you don't have answers for why your baby is suffering you know the hurt I am feeling right now. Please pray for my baby girl as she endures the lab work and tests tomorrow and that everything will come back normal!

6 comments:

I am so sorry that you and your family are going through this. My daughter was diagnosed just 2 months ago for Autism. It is incredible to me how these professionals just throw these words around (Autism, Cystic Fibrosis, etc) like it means nothing. I remember when I was told about Natalie, I couldn't breath, I sobbed, I was angry, I stopped listening to the rest as well. Your baby girl is beautiful and I will pray that everything comes back normal and that what is happening with her is something simple and easy to fix--like the milk allergy. Hang in there and God Bless.HUGS.

Thank you so much!! I am so sorry about your daughter and I can only imagine hearing such devastating news. Only God knows the plan for our lives and maybe he will use you as a wonderful example to others of an unconditional mothers love! I hope your family is wonderful you have a beautiful one! I hope to hear good news but am tying to prepare myself for anything.